Learning to Surf a Sea of Symptoms

Ever since I had my second craniotomy, I have been on a new drug called Vimpat. It is an anti seizure medication (which is SOP after brain surgery). There are various side effects, each requiring different levels of response.

Level 1: Less serious side effects

· dizziness, spinning sensation

· loss of balance or coordination

· blurred vision

· nausea, vomiting

· drowsiness, tired feeling

· headache

Level 2: Call your doctor

· double vision

· feeling like you might pass out

· fast or pounding heartbeats, fluttering in your chest

· feeling short of breath

· fever, skin rash, swollen glands, flu symptoms

· bruising, severe tingling, numbness, pain, muscle weakness

· nausea, upper stomach pain, itching, loss of appetite

· dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes)

· lower back pain, cloudy or bloody urine

· swelling, rapid weight gain, urinating less than usual

Level 3: Get emergency medical help (potential signs of an allergic reaction)

· hives

· difficulty breathing

· swelling of your face, lips, tongue, or throat.

All along, I was experiencing multiple Level 1 and Level 2 side effects, which were occurring intermittently and at different intensities. Each time I consulted my doctor, he deemed my serious side effects (numbness, severe tingling, pain & muscle weakness) as “acceptable.”

On Friday 12/23, I started exhibiting new serious side effects (fever, felt like I might pass out and extremely swollen face).  The neurosurgeon on call instructed me to come to the ER. Keith left work to take me. On the way down, a crazy new symptom showed up – I could barely open my eyes.  They were like small slits and it felt like an elephant was sitting on my eyelids.

The ER doctor consulted with the neurology department and my oncologist. Even though they had just weaned me off steroids on 12/18, general consensus was that I needed to resume taking them. In addition, an MRI was ordered to rule out the possibility of another brain tumor and/or other neurological issue.

The good news is I was released just after 9 PM. I had feared I was going to spend Christmas in the hospital. The whole ordeal provided us with the best Christmas present ever, since the MRI showed a tumor free brain!

Recovery Cha Cha Anyone?

The hardest part of recovery for my second craniotomy has been the complete lack of consistent progress.  This current process has been a case of two steps forward, and one step back and someone keeps changing the dance step.  The last time, my recovery looked like an ascending linear line. This time, there appears to be "no method to the madness".

A variety of symptoms present (dizziness, swelling of feet, ankle and face, severe tingling and numbness in my extremities, a foot drag, inability to swing my legs when getting in a car,  my knees feel as if they are being crushed, a spinning sensation) and then the symptoms disappear.  Some return, others don't.  The intensity of the symptom varies.

While knowing that each of these side effects were expected, I can not deny I find this disconcerting.  Since I am a goal oriented person, it is difficult to focus on 'winning' when the finish line keeps getting moved around.  Not knowing how long I can expect this to last has elevated the need to be able to envision my recovery to a whole new level.

Fortunately for me, I have been sent an abundance of the most encouraging cards to assist me in this regard.  I NEEDED TO PULL OUT ONE OF THE MOST INSPIRATIONAL THIS AFTERNOON AS THE SIDE EFFECTS WERE PARTICULARLY ROUGH. This is from Joe Del Regno (one of Melissa's friends in Rhode Island).  Here is what he told me:

"Wanted to share an inspiring story.  A master Japanese swordsman was filmed in super slow motion slicing a bullet in half fired from a gun 50 feet away.  100% documented.  A reporter described it as 'miraculous'.  The master paused and replied: "The miraculous happens when you dare to exceed your imagination."

The 2nd greatest power on earth is the gift of our imagination and our freedom to do with it as we choose, and as we dare. The greatest power is love, and I know you are blessed with an abundance.  With so much power behind you, dare to believe in miracles, and you will have them.  Imagine your health, and you will have it.  Take comfort in the love around you, and you will have the strength to accomplish anything you dare to imagine.  Here's to imagination, here's to daring, and here's to you."

Thanks for the inspiration Joe.

Such a Quandary

People keep asking "How in the heck is it that some one like me - who has spent most of her life eating the right foods, and exercising to stay physically fit, and basically possesses no bad habits - ends up being the person with cancer?"

On the most basic level, the sun is to blame since it caused the malignant melanoma I originally developed in 1994.  I could list the traits I possess that made it almost a certainty I would eventually develop skin cancer (FYI - I hit just about every one on the checklist).  The most significant indicator was I was born with a type of birthmark that indicates a tendency for skin cell change called a 'melanocytic nevus'.  http://en.wikipedia.org/wiki/Melanocytic_nevus

But why did my melanoma metastasize in a way that is almost statistically impossible?  To discover that I went from a stage one fully treatable and successfully resolved health issue to a stage four recurrence that after ten years was considered 99.9% cured did blow me away.  Remember though, the statistics associated with the rare disease of the nervous system my daughter Kelly developed were equally 'almost impossible' and that still happened.

Upon further discourse, I find what people are really seeking is an explanation that might not actually exist.  Or more importantly, they want an answer that makes them feel better.  It's wonderful to hear they think I am a 'good person' and we all struggle when 'bad things happen to good people'.  Others have expressed frustration that my family 'already took their turn' and we are not in need of an attitude adjustment.

I can think of more than one reason.

Simplistically, I could handle this.  Physically, not everyone could.  Therefore, I have been rewarded for my healthy lifestyle.  Mentally, I am capable.  There is no doubt in this regard as I have already demonstrated my ability to deal.  More importantly, Keith and Melissa have too.  Emotionally, I (and my family) have the support we need. 

How about considering that what we are experiencing is going to impact a significant number of lives.  I can't tell you how many of our friends and relatives are indicating that my situation is causing them to pause and reflect.  Or this has spurred them to take action on things they have been they have been thinking about doing.  This is not a bad thing.

Last but not least, this entire situation has compelled me to start writing.  I have been promising to write for YEARS.  My husband and daughter (and friends and family) always tell me to stop talking about it and just do it already.

Others who have previously expressed "Yes, you should write because you are talented" (and they are not related to me): my high school composition teacher (who tried to encourage me to pursue this in college) and my undergrad writing professor (who could questioned why I was pursuing a business degree).   As recently as this summer, my father showed me things I had written in grade school that my mother had saved all these years and he reminded me that my grade school teacher predicted I would be a writer.

This is not to say I have not spent any time in the last 19 weeks being alternately angry and afraid, questioning or crying, overcome with disbelief and full of apprehension for what lies in wait.  However, eventually all these feelings dissipate and  I FEEL POWERFUL.

Please know that a great deal of what allows me to feel this way has been the support everyone has provided.  It is almost as if someone has been in charge of orchestrating a flow of exactly what I need - a card that makes me laugh out loud, a notice of a mass that insures someone is consistently praying for me, lovely flowers, good food to eat, candles for aroma-therapy or a note that it is so poignant I am truly impressed by the sender.  Mere words can not express my appreciation for how long this has continued.

Here is just one example.  This a graphic that is on display around Melissa's workplace (corporate headquarters for CVS  in Woonsocket, RI) which I believe was create by a co-worker of hers.

Imagine That

Can you imagine a game plan where one of the components is simply allowing time to pass so healing can occur?

Apparently, this is a well accepted strategy after brain surgery.  I am learning there are certain aspects of my recovery I am not completely in control of and sheer determination - regardless of my exertion level - has no effect on speeding up the process.  It appears I must be patient.

You can pick yourself up from the floor now.  I probably should have warned you I would be sharing some shocking information.  (Actually, since one of the major symptoms I am experiencing is dizziness, I might be picking myself up off the floor - LOL).

Kidding aside, my prognosis overall is still amazingly positive.  My brain just needs time to recuperate.  I have to remember that the second tumor was not near the surface and enclosed by a cyst like the first one.  This time it was deeper and located in my brain tissue itself.  Therefore, the side effects from edema will take longer to subside.

The numbness in my extremities might last longer-term, but I can handle that.  Heck, I might even develop a very sexy but elegant combination slide/shuffle that burns more fat than mere walking.  Thus freeing me to reduce the aerobic portion of my future workouts and focus on my favorite part - the weightlifting.

The current vertigo (not present after my first craniotomy), while unsettling, is not expected to be permanent.  However, until it passes, I can not be left alone.  Once the potential of a seizure (or a possible fall) subsides, the need for 24 hour oversight will end.

Thankfully, we have a LONG list of willing family, friends and neighbors to call on for help.  I am beyond grateful for every one's time which is allowing my husband to go to work and my daughter to remain in Rhode Island until she comes home for the holidays.

Kudos to my sister Ruth who suggested to me that rather than consider the shifts with me as folks having to "baby-sit Peggy," I should try to view the situation as an opportunity for people who care about me and want to help in some way have the pleasure of providing care giving.  This was after I saw the neuro people and I fretted about how many days of assistance were going to be needed and how busy folks are this time of year.

Hopefully, my requiring supervision 24/7  won't continue long enough for there to be ample material to start a reality series called "Dizzy Housewives of Detroit" and Andy Cohen from Bravo won't be showing footage of my caregivers throwing me under the bus!

Achieving The Needed Balance

Melissa was granted a temporary reprieve from our Scrabble match over Thanksgiving by family members and friends who supplied me with a few new sources of entertainment.  One was a challenging wood puzzle with intricate pieces (finished in 4 days though).

Also provided were a couple of new games to try: a dice game called Farkle (very short lived - as it is based mostly on chance) and a word game called Bananagrams (much better for me as it actually involves strategy).  Down 2 to 1 to my sister after three rounds, I realized I had to change my approach.  Since there are no points involved like in Scrabble, there was no advantage in creating create big words that utilize the most letters; I just needed to finish first.

Sometimes the key to accomplishing any mission is taking the opportunity to re-strategize along the way.  One of my end goals after I finish showing melanoma who is boss is to return to work ASAP.  This will require me to be drug free (off both the anti-swelling and anti-seizure medication).

My doctors need to find a way to alleviate the side effects of some brain swelling which is occurring as a result of my radiation treatment, while allowing my brain to heal from the actual tumor resection.  The conundrum is that while the steroids in the anti-swelling medication reduce brain edema, the opposing effect of the medication is that it slows the healing process of the brain tissue after surgery.

I am going to leave that balancing act to my neurosurgeon who we see tomorrow morning to find a resolution.  That being my only obstacle at this point is a true blessing.

Another Exceptional Outcome

I checked into the same day surgery area just before 6 AM and was quickly surrounded by my radiation team.  An unexpected added little bonus was that both of my prep nurses - Marilyn and Connie - were repeats from my first gamma knife.  It was nice to interact with folks I already knew rather than complete strangers.

After an MRI confirmed that enough post-surgical swelling had subsided to proceed with the gamma knife treatment, I was sedated and the 4 screws were placed in my head.  This time when I woke up there wasn't the shock of waking up to a large halo on my head that I could not have dreamed up in my wildest imagination.

Even though this tumor and tumor bed were much smaller, it took almost two hours for Dr. Kim, the radiation surgeon, and Dr. Chen, the physicist, to plot and chart the course, then program the machine.  The blessing is I was not two days post lung biopsy and dealing with that discomfort.  All I had to contend with was trying to find a way to be comfy with my weighty and unwieldy halo.  Ultimately, once they connect my titanium halo with the much larger stereo-tactic frame (pictured on the cart below) that slides into the radiation machine, I don't have to support the weight of the entire conglomeration.

Biggest Bonus: I could eat while I waited as a distraction and I was starving since I hadn't eaten since the night before due to the anesthesia.  Best of all, it was all the good food my daughter instructed be packed.  The tricky part is getting the food through the maze of metal and into your mouth before it falls off the utensil (but where there is a will, there is way).


The treatment was finished in just under two hours.  Keith and I were headed to the car by 3 PM and I was home in my own bed icing down my screw holes before 4 PM.  If I am to experience side effects, they should manifest within 72 hours. So far, so good: 32 hours have passed and I have not exhibited any of the harsher potential side effects from the radiation (only fatigue).  Only 40 more hours to go. 


FYI: The transport escort pushing my wheel chair when we departed wanted me to know that even though there are patients with every kind of cancer down at Karmanos, I helped him complete his 'bucket list' of various cancers as I was his first brain cancer patient at Karmanos.  So glad to be of service to him!